The beauty of raising a genetically-enhanced child - not many people can brag that they have an extra chromosome... Follow the journey of our first-born son, Sheridan Michael, as we travel down a path that looks different than what we imagined, but is far more incredible than we could have ever hoped for.

05 February 2009

My Pregnancy with Sheridan

FINDING OUT

I found out I was pregnant on December 23, 2007... the best Christmas gift EVER.

I decided to wait until Christmas day to tell Gary. As soon as I took the third pregnancy test (What can I say? I had to at least check the reliability of the tests, right?), I called a friend and asked if I could go over to his house to make a gift for Gary. My plan: make two stockings (we've never hung stockings on Christmas Eve before) - one would say "Daddy" and the other would say "Mommy" - hang them on the mantel on Christmas Eve after Gary goes to bed, and Gary would see them first thing Christmas morning. Surprise!

I went to my friend's house, used Elmer's glue and silver glitter to write "Mommy" and "Daddy" on the white fur cuff (they were NOT cute - my friend's five-year-old could have done much better), and then hid the two stockings in my closet. Each time Gary left the house I would get so eager to tell him that I would hang the stockings over the fireplace and wait for him to get home. The moment he would drive up the driveway I would take the stockings down quickly and run to hide them. I just knew it would be worth it to wait until Christmas morning.

I hung the stockings on Christmas Eve after Gary had gone to sleep (for those of you who know Gary, you know just how late I had to stay up to accomplish this). I left two lights on in the living room to shine on the stockings. I was so excited for Gary to wake up in the morning.

On Christmas morning we rose early (before Sheridan was born we always had to be at least 4-5 different places on Christmas day which meant we were up at the crack of dawn). We walked out to the living room to exchange our gifts. Gary walked right past the fireplace and stockings. Spotlight and all. Hmmmm... maybe he's just tired.

We opened the few gifts we had to exchange, and I asked him if he had missed anything. He looked at me quizzically. I finally had to point toward the fireplace. "Oh!" he said. He rushed right over and immediately shoved his hand elbow-deep into the stocking. Quite honestly, I should have seen that coming.

I looked at him, stopped him, and asked, "Did you even look at the stockings?" "Yeah," he said, "they're nice."

"Did you read them?" I asked. "Ohhhhh," he said as he pulled his hand out of the empty stocking. He looked closely at the stockings. Back and forth between the two.

Then he looked at me with a puzzled look on his face, "Why do they say that?" I smiled and waited for him to get it. He got it. I nodded and told him, "I'm pregnant," as he gave me the tightest hug he has ever given me.

Later that morning we announced it to my dad over breakfast, to Gary's mom and brothers while opening gifts, and at my grandfather's house after the Christmas dinner grace (Gary asked my grandpa if he could make an announcement after grace... as soon as grandpa finished grace he told everybody to wait - very important given that everyone rushes for the food line in the Mangino house - everyone looked around in anticipation because everybody knows it's a BIG DEAL if somebody makes an announcement after grace; Gary simply raised his hand and said, "I just want you all to know that Lisa is pregnant!" - cheering and hugs soon followed).

I'm glad I waited until Christmas morning to tell Gary. And I'm thrilled Gary was able to make the big announcement after grace at my grandfather's house - he had always looked forward to doing that one day. Dream accomplished!

THE FIRST TRIMESTER

So I'll get right to the most common things pregnant women get asked: yes, I was nauseous; no, I never did throw up; yes, I was very tired; no, I wasn't having weird cravings (it's hard to crave any food item when you can barely tolerate the smell of water).

I lost about 20 pounds in my first trimester (no worries, I had enough to lose and then some). The constant low-grade nausea was awful, but I'm thankful I never had to actually throw up (which is literally my least favorite thing in the world to do).

I lived off of Trader Joe's low-fat greek-style yogurt (VERY high in protein) and fresh fruit. Poor Gary... I had an intense aversion to many foods, especially animal proteins - and chicken in particular (which was weird because it was a main staple in my diet). If I smelled chicken it would make me feel so sick. You couldn't even say the word chicken without me turning green. Gary had to fend for himself every day throughout my pregnancy - I simply couldn't cook. Being around food, prepping food, smelling food, cooking it... it all made me sick. So, when Gary decided that he couldn't live off of plain yogurt, fruit, and peanuts, he started doing all the shopping, cooking (for himself only), etc. Poor guy. I know he was secretly panicked that he would be on his own forever (he will admit that he prefers my cooking to his own).

Doctor visits were pretty uneventful in the beginning... although Gary and I originally wanted to have the baby with a midwifery practice, they determined I wasn't low risk enough and it was best that I stick with OBs. And I think that all happened for many reasons (we'll get to those)...

My OBs asked that I take the glucose test (to test for gestational diabetes) and I refused. I knew I was predisposed to diabetes and I wasn't eating sugar, so why tempt fate with a glucose test? I did, however, suggest that I test my blood sugar 4-5 times a day and work with the "Sweet Success" program for gestational diabetes (whoever comes up with these clever program names should be ashamed of themselves). Well, not long after doing this my blood sugar started to go crazy on me. I never had super high blood sugar, but it did get higher than it should and it was very difficult to control with food alone (I was on a very strict "diet" to try to avoid diabetes during pregnancy). I continued to eat the same way, and chose to go on insulin. It helped to keep my blood sugar steady and under control (fast forward 9 months and I did NOT deliver a "big baby" and didn't have any complications common for diabetic mommies).

I won't spend too much time talking about the Sweet Success program here (I could have written a whole blog devoted to that experience), but suffice to say that I dreaded my appointments, hated most of the providers I saw there, and was simply tired of being demeaned (especially by nurses and dietitians who told me they didn't know how to read and understand the latest scientific research around gestational diabetes or nutrition, and weren't sure how to help me because they'd never worked with a woman who hate so healthy before - WHAT?!). That being said, I'm sure some women appreciate that program greatly. Enough said.

I was eventually sent for an ultrasound to do some of the early diagnostic stuff OBs like to do. Cool. Gary and I sat in a dark room while some lady pushed on my belly with a goopy wand. I knew something was up when she continued to go back and re-image the same thing over and over again. Every time she moved on to something else ("Oh, look at the hands!" or "Oh! Look at the feet!" or "Oh! Look at the heart beating"), she always moved back to re-image and re-measure something in the baby's head. I knew she thought something was wrong.

After the appointment the technician disappeared saying that she wanted to have someone look over the ultrasound before we left. We waited and waited and waited. During that time Gary announced he knew we were having a boy - he saw boy parts in the ultrasound. The technician said she couldn't tell the sex, so how is an amateur going to see anything in that fuzzy black-and-white image? It could have been the umbilical cord (of course, Gary was vindicated at the next ultrasound when the tech and Gary - at the same time! - saw Sheridan's little boy parts).

So, back to the waiting... eventually, the tech came back and said, "You will be receiving a call from your OB about the results of today's ultrasound. She will likely call you this afternoon." Never a good sign. Doctors never call right away like that if it is good news, and technicians certainly don't disappear into back rooms for good news...

Well, I didn't wait for my OB to call. I called her. Bottom line: they were concerned about the size of the left and right ventricles in the baby's brain (where the spinal fluid pools and then recirculates through the spinal column). They thought they looked a bit enlarged and my OB asked that I see a perinatologist for a follow-up ultrasound. And thus begins lots of testing, and refusal of tests...

After the specialist did the follow-up ultrasound, she explained that the baby looked like he had ventriculomegaly (enlarged ventricles) but she wasn't sure why. She even specifically looked for "markers" of Down syndrome - her thinking was that sometimes babies with Down syndrome have ventriculomegaly (but the enlarged ventricles could be due to many, many factors, not just Down syndrome). The ultrasound showed nothing unusual, so we knew we would just continue to monitor everything throughout the pregnancy.

The perinatologist and my OB requested that I do a series of tests (particularly blood tests and an amniocentesis) to help them identify what was going on with the baby. Gary and I both explained to them that we would not be doing any invasive tests, and we had planned to not do the typical blood tests (e.g., AFP screening) to determine if the baby had any "problems." We told the doctors that an amnio was out of the question - it carries a risk of miscarriage that is greater than the risk of something being wrong with the baby. More importantly, we told them...

The results of any tests will not change our minds about the pregnancy. Test results won't impact our decisions. Gary and I even mentioned to a few friends that if we have a baby with special needs, then we have a baby with special needs. I can't remember how many times we said that to doctors and the few friends we told about the potential ventriculomegaly complication.

We did agree to one blood test because the docs kept hounding us - the possibility of a genetic disorder bothered the doctors more than it bothered Gary and I. So, they took my blood, results were negative, Gary and I were happy to be done with this, and the docs still insisted on an amnio ("you still have options" they told us - the only option for us was to have our sweet little Baby Holiday - that's what we called Sheridan when he was in utero). But the docs asked us if we wanted to have an amnio at every appointment (until the end of my second trimester).

Nope. Not gonna happen. If we have a baby with special needs, then we have a baby with special needs.It became our mantra. We had no idea that being this accepting early in the pregnancy would make a world of difference after the baby's birth...

Don't get me wrong, initially Gary and I were concerned about what this meant for our baby. For a brief moment I let myself be sad at the prospect of something going "wrong" (one possible outcome of ventriculomegaly is mental retardation) - and my poor friend Cindy who called me right at that moment got an earful of tears... but Gary and I truly accepted our baby for who he was going to be.THE SECOND TRIMESTER

So, I was finally able to branch out and eat more than yogurt and fruit, and slowly started to gain steady weight. I still battled with the Sweet Success program. I still refused further testing. And by the end of the second trimester I finally stopped commuting to Monterey (oh yeah, did I mention that I'm a Visiting Professor at the Naval Postgraduate School and I was commuting 4 hours - one way! - to teach a class in the Graduate School of Business and Public Policy? - it wasn't too bad given that I could stay in the Bachelor Officers' Quarters during the week to avoid driving every day).

The second trimester was just more of the same, but I was less nauseous.

More ultrasounds were done to monitor the baby's ventricles. Nothing much changed at all. The ventricles still looked slightly enlarged, everything else looked normal. No need to get excited beyond the usual "we're having a baby!" excitement.

One day it dawned on me that we needed to take a birthing class. I remember thinking, "I guess we should figure out how to have this baby" - especially given that I really wanted to have a natural birth and Gary was very supportive of this. But I know I didn't know what I was supposed to do, so how was Gary supposed to know how to help me?

We happened upon a fantastic birthing class (The Bradley Method) taught by a great, down-to-earth, not-too-granola, straight-talking, postpartum doula. Michelle kicks ass, and it's too bad that she's not teaching any classes right now. She is very good at it - but I'm happy she is following her dream to go to school to be a nurse (and ultimately she wants to be a lactation consultant - and that field needs her).

Anyway, the class was great, although deep down I always questioned whether or not I would be able to go through with a natural birth. Some of the things moms-to-be are taught to help deal with labor are things like visualization (imagine yourself floating down the river and you see a red canoe with one oar in the water, you hear the calm waves lapping at the shore, gently shaping the smooth river rocks you can see beneath your feet through the crystal-clear water...). Yeah, visualization was NOT for me. Whenever Gary would practice it with me I would get so annoyed (why does the canoe have only one oar in the water? why do I care about waves lapping anything? and where the hell is this river taking me anyway?).

But visualization is the not crux of the Bradley Method... the goal is husband-coached child birth. Gary was to be my coach and help me through the labor as a true partner. Unlike how Kimo helped his wife by taking a six-hour nap in the hospital while she labored away. Catherine, you are a saint for putting up with him.

So, Gary and I attended child birth classes. I continued to watch what I was eating (although by now I was on insulin because it was the best way to keep my blood sugar under control and steady, no matter how well I ate). And we continued to look forward to the birth of our son.

THE THIRD TRIMESTER

Throughout my pregnancy I had some back troubles (threw it out pretty bad a couple of times) that only seemed to get worse as the pregnancy progressed. I ended up on bed rest quite a bit during the last trimester... but I continued to work (did I mention I had eight jobs throughout most of my pregnancy?) and we continued to attend our child birth classes.

I have to mention here briefly that my mom threw us the most kick-ass baby shower ever... it was co-ed (and although most of the guys initially dreaded the idea of going to a shower, they all had a great time), it was not your typical baby shower, had a great brunch buffet, had super fun nontraditional games (thanks, Aunt Dianne!), and a diaper challenge throw-down between me and Gary (Gary challenged me to a diaper-changing contest - he researched how to change a diaper on the internet, he'd never changed a diaper before in his life). Needless to say, I won the challenge (but not by unanimous decision - my mother-in-law voted for Gary despite the fact that his baby's diaper was falling off - but I wasn't bitter!). It was SO much fun and we are very grateful to my mom for putting together such a fun and memorable event to help us celebrate Baby Holiday's pending arrival.

At around my 36th week, I remember standing in my grandfather's kitchen, vacuum sealing pasta we made just a few days prior. My stomach started to hurt really bad and I felt like I was coming down with some kind of GI illness. I couldn't stand up, had to sit down. My grandpa finally looked at me and said "I think you need to go home and rest. Get off your feet." Smart man that grandpa.

On my way home, the pain got more intense and I really had a hard time driving. I finally got home and called my OB's office to talk to the advice nurse - I was really worried that I had food poisoning or some severe illness coming on that might hurt the baby. The advice nurse was gone for the day so I was told to come into the maternity wing of the hospital to be evaluated by the doc on call (so I could avoid the ER).

Man, I could barely get myself to the hospital (and it's only a few blocks from our house), and was grateful that the hospital room they put me in to triage me had a private bathroom. I called Gary at work to let him know I was going to be checked out, told him not to leave work, nothing to be worried about, I'll call you later when I know more... He was standing in my triage room in under 10 minutes. So much for him not worrying.

They hooked me up to a machine, strapped something on my belly, and the nurse laughed as I told her about the GI pains I was having. "Those are called contractions," she told me. She showed me what they looked like on the little computer print out. Hmmm... so that's what a contraction feels like. And they kept coming. And they kept hurting. And then I realized, "oh yeah, I'm supposed to relax during the contractions." Sounds counter-intuitive and nearly impossible to do... but trust me, it works.

So, I was a couple centimeters dilated, I was having contractions. "It could be any day now, or two weeks from now," the nurse said as she sent me on my way.

I had contractions on and off for weeks. Sometimes keeping me up all night. I walked like crazy all day long (walking is supposed to help move things along). All I had to show for it was loss of sleep and contractions day in and day out.

Meanwhile my OBs and the perinatologist had been after me to agree to be induced at 38 weeks (they'd been trying to get me to agree since the beginning of the third trimester). Why?! All they could tell me was that it's better for a diabetic woman to be induced at 38 weeks. They were willing to give me an extra week because my blood sugar had been so well controlled. Also, the ventriculomegaly resolved itself and all ultrasounds were now "perfectly normal" to use their words. So, again, tell me why you want to force my baby from his current home before he's good and ready to come out on his own?!

Gary and I struggled with this idea of being induced. We didn't like it. Not one bit. For many, many reasons... I never agreed to it. Every time the docs brought up the induction, I would tell them that my husband and I were thinking about it. Truth is, we didn't want to do it unless they had some data to show that waiting truly put the baby at risk. They could not provide us with any data - "well, it's just an international guideline - everyone does it but we don't have any data per se that this is what's best, especially for a woman like you whose blood sugar is so well controlled." Hmmmm... they didn't exactly make a great a case for evicting my baby early. Gary and I decided we would just wait things out, get closer to 38 or 39 weeks, and make a decision if we needed to based on what was going on with Baby Holiday. Oh yeah, forgot to mention, we (meaning me and the baby) were being monitored multiple times each week at this point (baby's heart rate at rest, during activity, back at rest, and ultrasounds - I absolutely HATED this process and skipped some appointments so I wouldn't have to be harassed, but kept most of them so I would appear to be "compliant" and could avoid worse harassment).

Funny thing is, Sheridan was born exactly at 38 weeks. Precisely on the day the docs wanted to induce me, but they never got the chance! Sheridan knows how to take care of himself and his mommy...

Thank you so much for including me in your list. As always, you are so articulate! And Sheridan is beautiful. What a powerful story you have to tell -- I'm so glad you are doing it. And I echo the comment above -- your blog should be turned into a book at some point down the road.

What a joy this was to read ... and I already knew the story, but reading it was amazing. I truly hope you're spreading this far and wide, not only to those of us who know and love you, but also to other parents -- both of SN kids or otherwise -- who would SO benefit from reading this.

Long post, but worth it... Thank you, John Michael, for being patient while Mommy reads about little Sheridan :-) Great writing -- I love your attitude about having a special needs child while you were pregnant.

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